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BACKGROUND: The identification of pain originating from distinct biological processes may lead to individualised pain treatment. In this study, we aimed to explore the pain experiences of patients with rheumatoid arthritis (RA), differentiating between those predominantly exhibiting features of peripheral inflammatory versus centrally mediated pain. METHODS: Through a multimethods approach we (i) quantitatively analysed the differences in pain descriptors between patients diagnosed with RA experiencing peripheral inflammatory and centrally mediated pain, utilising the Short Form-McGill Pain Questionnaire which includes the pain visual analogue scale (VAS) and (ii) qualitatively explored their subjective pain experiences grounded in the biopsychosocial model, commonly applied in chronic pain. RESULTS: Participants with centrally mediated pain reported higher pain scores on the VAS, used a wider range of pain descriptors, and a higher proportion selected each descriptor compared to those with inflammatory pain (p < .001). The qualitative analysis revealed the centrally mediated pain group's experiences were overwhelming and relentless, struggling to precisely articulate the nature of their pain. In contrast, individuals with inflammatory pain expressed their pain in more tangible terms and shared their adaptive and coping strategies. Importantly, both groups revealed the substantial psychological, functional and social impacts of their pain, highlighting the often 'invisible' and misunderstood nature of their symptoms. CONCLUSION: This study has gained a deeper insight into the pain experiences of patients living with RA, particularly in differentiating between centrally mediated and inflammatory types of pain, potentially facilitating a more individualised approach to pain treatment. PATIENT CONTRIBUTION: Patients actively participated in the study conception and design. This engagement includes collaboration with key stakeholders, such as members of the National Rheumatoid Arthritis Society and Patient Research Partners (PRPs), who provided continuous feedback and guidance throughout the research process. Specifically, the qualitative element was coproduced with two PRPs, who were involved in co-leading the focus groups and data analysis.
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Artrite Reumatoide , Medição da Dor , Humanos , Artrite Reumatoide/psicologia , Artrite Reumatoide/complicações , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Adaptação Psicológica , Inflamação , Dor/psicologia , Adulto , Dor Crônica/psicologiaRESUMO
BACKGROUND: People living with human immunodeficiency virus (HIV) are disproportionately impacted by socioeconomic deprivation and are at increased risk of developing other long-term conditions (LTCs). These illnesses require transformative action to tackle the adverse effects on their health. Data on lived experiences of LTCs among people living with HIV of Black African and Black Caribbean ethnicities are sparse, and how people with LTCs are impacted by social determinants of health (SDoH). METHODS: Through a phenomenological study design this qualitative study, conducted in 2022, comprised four focus group discussions (FGDs) with 20 people of Black ethnicities living with HIV were purposively invited from a community organisation (CO) in London, including four semistructured interviews with CO staff. Following transcription, qualitative data were analysed thematically and measures to validate the findings were implemented. RESULTS: The findings are presented in terms of the following four levels of SDoH: (1) individual determinants (such as the impact of SDoH on lifestyle modification and self-management); (2) interpersonal determinants (such as positive experiences of accessing healthcare for LTCs); (3) clinical determinants (such as care pathway barriers) and (4) systemic determinants (such as systemic barriers related to race/ethnicity). CONCLUSIONS: It is necessary to provide ongoing and interactive education to community members who live with HIV, focusing on risks and management of LTCs. Additionally, individuals would benefit from support to navigate increasingly complex and fragmented health services. Health Service staff require cultural competence when caring for patients of Black African and Black Caribbean ethnicities with complex health and psychosocial needs. PATIENT OR PUBLIC CONTRIBUTION: The research team collaborated with an HIV CO in South London from the very start of the project to agree the study design and learn about the realities of their daily lived experiences. Community collaborators helped to develop the semistructured interview and FGD topic guides, and were directly involved in the data gathering, analysis and validation.
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População Negra , Grupos Focais , Infecções por HIV , Pesquisa Qualitativa , Determinantes Sociais da Saúde , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , População Negra/psicologia , Região do Caribe/etnologia , Doença Crônica/etnologia , Acessibilidade aos Serviços de Saúde , Infecções por HIV/etnologia , Infecções por HIV/psicologia , Londres , Determinantes Sociais da Saúde/etnologia , África/etnologiaRESUMO
INTRODUCTION: This paper presents the study protocol for a feasibility study of a manualised mental health awareness and stigma reduction intervention for Black faith communities, as part of the Outcomes and Needs of Traditional Religious And Complementary practitioners (ON TRAC) project. The primary objective is to assess the feasibility and acceptability of the intervention and the secondary objectives include assessment of the feasibility of: recruiting participants to take part in the intervention, delivering the intervention, and conducting qualitative assessments, and use of the selected scales. The findings from this study will be used to inform the development of a subsequent trial which will focus on exploring the potential impact of the intervention on stigma-related knowledge, attitudes, and behaviour. METHODS AND ANALYSIS: The study uses a mixed-methods approach. A total of 80 participants from four Black Majority Churches in South London will be recruited. Randomisation of the participants will be at an individual level to either the intervention group (who will participate in the 10 week Mental Health Awareness Course intervention) or to the waiting list control group (who will receive the same intervention, 8 weeks after the intervention group). Outcomes for both arms will be collected at baseline, postintervention, and at 4 week follow-up. In addition, focus group discussions will be conducted with participants in the intervention group, a week following the end of the 10 week session course, to investigate the feasibility and acceptability of the mental health awareness course. ETHICS AND DISSEMINATION: The results of this research will be disseminated at local, national, and international levels. TRIAL REGISTRATION NUMBER: ISRCTN12253092.
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Saúde Mental , Humanos , Estudos de Viabilidade , Londres , Grupos FocaisRESUMO
BACKGROUND: Persistently active rheumatoid arthritis (pactiveRA) may be due to the interplay between biological and non-biological factors. The role of socioeconomic factors remains unclear. OBJECTIVES: To explore which biological and non-biological factors associate with pactiveRA. METHODS: Adults with early RA in the National Early Inflammatory Arthritis Audit, recruited from May 2018 to October 2022, were included if having pactiveRA or persistently low RA (plowRA). The pactiveRA was defined as three consecutive Disease Activity Score-28 joints (DAS28) of >3.2 at baseline, 3 and 12 months. The plowRA was defined as DAS28 ≤3.2 at 3 and 12 months. Stepwise forward logistic regression was used to explore associations with pactiveRA (outcome). Age and gender were included a priori, with socioeconomic factors and comorbidities as exposure variables. RESULTS: 682 patients with pactiveRA and 1026 plowRA were included. Compared with plowRA, patients with pactiveRA were younger (58, IQR: 49-67) versus (62, IQR: 52-72), and included more women (69% vs 59%). The pactiveRA was associated with worse scores in patient-reported outcomes at baseline, and anxiety and depression screens. Overall, there was clear social patterning in pactiveRA, with age-by-gender interaction. Logistic regression indicated age, gender, social deprivation and previous or current smoking, were independently associated with pactiveRA, after controlling for disease severity markers (seropositivity). Depression, lung disease, gastric ulcers and baseline corticosteroid use, were also associated with pactiveRA (p<0.05 for all). CONCLUSION: Socioeconomic factors and deprivation were associated with pactiveRA, independent of clinical and disease characteristics. Identifying 'adverse' socioeconomic drivers of pactiveRA can help tailor interventions according to individual need.
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Artrite Reumatoide , Índice de Gravidade de Doença , Fatores Socioeconômicos , Humanos , Artrite Reumatoide/epidemiologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Reino Unido/epidemiologia , Adulto , Comorbidade , Medidas de Resultados Relatados pelo PacienteRESUMO
OBJECTIVES: Disease management in rheumatoid arthritis (RA) requires holistic assessment. We aimed to design personalised care packages suitable for people with RA. METHODS: This study was conducted using a mixed-methods approach and exploratory sequential design. Consensus workshops were held, involving people with RA and healthcare professionals (HCPs) treating them. Subsequently, an online survey sought views on future care packages for people with RA at relevant disease progression/stages, based on (1) results from previous quantitative data analyses (eg, socioeconomic/clinical factors), and (2) themes identified during workshops. RESULTS: Two conceptual care pathways were identified: (1) around the time of RA diagnosis, an early opportunity to influence the disease course; (2) for individuals with established RA, emphasising the importance of 'the right MDT member at the right time'.Three care packages were suggested: (1) early care package (around RA diagnosis): introduction to MDT; (2) continuity of care package (established RA): primary/secondary providers; and (3) personalised holistic care package: integral to packages 1 and 2, implemented alongside allied health professionals.The survey received 41 responses; 82.9% agreed that people with RA need a consistent 'early care package' at diagnosis. 85.4% approved of additional care packages tailored to individuals' clinical, psychological and social needs when moving to different stages of their long-term disease. Fleiss' Kappa calculations demonstrated fair level of agreement among respondents. CONCLUSION: Two care pathways, with three tailored care packages, were identified, with potential to improve management of people with RA. Future research will help to determine if such care packages can impact clinical (including patient-reported) outcomes.
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Artrite Reumatoide , Projetos de Pesquisa , Humanos , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/terapia , Procedimentos Clínicos , Pessoal de Saúde , Medidas de Resultados Relatados pelo PacienteRESUMO
Background: Efforts to understand the mechanisms and consequences of mental health-related stigma and discrimination need to center the perspectives of people affected by these negative impacts, through research efforts that are led or co-led by people with lived experience (PWLE) of mental health conditions. Methods: This study used co-production principles to explore global perspectives of stigma and discrimination among people meeting the inclusion criteria of identifying as PWLEs and being willing to share their experiences of stigma and discrimination resulting from a diagnosis of a mental health condition, and who had also participated in anti-stigma activities. Participants were recruited online via a self-selecting snowball sampling method. Qualitative data were collected from respondents via an anonymous global online survey conducted between 12/01/2021 and 02/28/2022. The main outcomes assessed were open-ended, qualitative responses to questions exploring experiences of stigma and discrimination, experiences regarding diagnoses, language/terminology related to mental health, impact of stigma and discrimination, and involvement with anti-stigma interventions. Data were synthesised through digital text network analysis and thematic content analysis. Findings: A total of 198 respondents from over 30 countries across Europe, the Americas, Africa, Asia, and Australia/Oceania were included in the study. The results reflected five themes: 1) the role of language and words; 2) the role of media in perpetuating and reducing stigma; 3) societal reactions to mental health conditions and strategies to cope with these; 4) knowledge about activities to reduce stigma and discrimination and their impact; and 5) personal involvement in activities to reduce stigma and discrimination. Interpretation: The findings highlight that people with mental health conditions are aware of and experience stigma and discrimination across core domains of daily life. The importance of recognising the key role PWLEs can play in efforts to reduce stigma and discrimination was highlighted, and how they can be appropriately supported to contribute and have their experiential expertise recognised. Meaningful and authentic collaborations between PWLEs and other stakeholders can enhance the quality and relevance of strategies to reduce stigma and discrimination. This is, to our knowledge, the first study of its kind to use a co-production approach to explore experiences and reflections of stigma and discrimination related to mental health from a global perspective. However, the results are not broadly representative of the general PWLE population or suggestive of globally uniform experiences of stigma and discrimination. Funding: None.
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BACKGROUND: According to epidemiological studies, psychosocial factors are known to be associated with disease activity, physical activity, pain, functioning, treatment help-seeking, treatment waiting times and mortality in people with rheumatoid arthritis (RA). Limited qualitative inquiry into the psychosocial factors that add to RA disease burden and potential synergistic interactions with biological parameters makes it difficult to understand patients' perspectives from the existing literature. AIM: This study aimed to gather in-depth patient perspectives on psychosocial determinants that drive persistently active disease in RA, to help guide optimal patient care. METHODS: Patient research partners collaborated on the research design and materials. Semistructured interviews and focus groups were conducted online (in 2021) with patients purposively sampled from diverse ethnicities, primary languages, employment status and occupations. Data were analysed using inductive thematic analysis. RESULTS: 45 patients participated across 28 semistructured interviews and three focus groups. Six main themes on psychosocial determinants that may impact RA management were identified: (1) healthcare systems experiences, (2) patient education and health literacy, (3) employment and working conditions, (4) social and familial support, (5) socioeconomic (dis)advantages, and (6) life experiences and well-being practices. CONCLUSION: This study emphasises the importance of clinicians working closely with patients and taking a holistic approach to care that incorporates psychosocial factors into assessments, treatment plans and resources. There is an unmet need to understand the relationships between interconnected biopsychosocial factors, and how these may impact on RA management.
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Artrite Reumatoide , Humanos , Pesquisa Qualitativa , Grupos Focais , Artrite Reumatoide/epidemiologia , Artrite Reumatoide/terapia , Efeitos Psicossociais da Doença , Gerenciamento ClínicoRESUMO
OBJECTIVE: Social determinants of health (SDH) are important determinants of long-term conditions and multimorbidity in the general population. The intersecting relationship between SDH and multimorbidity in people with HIV remains poorly studied. DESIGN: A cross-sectional study investigating the relationships between eight socio-economic parameters and prevalent comorbidities of clinical significance and multimorbidity in adults of African ancestry with HIV aged 18-65âyears in South London, UK. METHODS: Multivariable logistic regression analysis was used to evaluate associations between SDH and comorbidities and multimorbidity. RESULTS: Between September 2020 and January 2022, 398 participants (median age 52âyears, 55% women) were enrolled; 85% reported at least one SDH and 72% had at least one comorbidity. There were no associations between SDH and diabetes mellitus or kidney disease, few associations between SDH (job and food insecurity) and cardiovascular or lung disease, and multiple associations between SDH (financial, food, housing and job insecurity, low educational level, social isolation, and discrimination) and poor mental health or chronic pain. Associations between SDH and multimorbidity mirrored those for constituent comorbidities. CONCLUSION: We demonstrate strong associations between SDH and poor mental health, chronic pain and multimorbidity in people of black ethnicities living with HIV in the UK. These findings highlight the likely impact of enduring socioeconomic hardship in these communities and underlines the importance of holistic health and social care for people with HIV to address these adverse psychosocial conditions.
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Dor Crônica , Infecções por HIV , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Multimorbidade , Determinantes Sociais da Saúde , Estudos Transversais , Infecções por HIV/complicações , Infecções por HIV/epidemiologia , ComorbidadeRESUMO
BACKGROUND: Adolescents are vulnerable to stressors because of the rapid physical and mental changes that they go through during this life period. Young people residing in slum communities experience additional stressors due to living conditions, financial stress, and limited access to healthcare and social support services. The Adolescents' Resilience and Treatment nEeds for Mental Health in Indian Slums (ARTEMIS) study, is testing an intervention intended to improve mental health outcomes for adolescents living in urban slums in India combining an anti-stigma campaign with a digital health intervention to identify and manage depression, self-harm/suicide risk or other significant emotional complaints. METHODS: In the formative phase, we developed tools and processes for the ARTEMIS intervention. The two intervention components (anti-stigma and digital health) were implemented in purposively selected slums from the two study sites of New Delhi and Vijayawada. A mixed methods formative evaluation was undertaken to improve the understanding of site-specific context, assess feasibility and acceptability of the two components and identify required improvements to be made in the intervention. In-depth interviews and focus groups with key stakeholders (adolescents, parents, community health workers, doctors, and peer leaders), along with quantitative data from the digital health platform, were analysed. RESULTS: The anti-stigma campaign methods and materials were found to be acceptable and received overall positive feedback from adolescents. A total of 2752 adolescents were screened using the PHQ9 embedded into a digital application, 133 (4.8%) of whom were identified as at high-risk of depression and/or suicide. 57% (n = 75) of those at high risk were diagnosed and treated by primary health care (PHC) doctors, who were guided by an electronic decision support tool based on WHO's mhGAP algorithm, built into the digital health application. CONCLUSION: The formative evaluation of the intervention strategy led to enhanced understanding of the context, acceptability, and feasibility of the intervention. Feedback from stakeholders helped to identify key areas for improvement in the intervention; strategies to improve implementation included engaging with parents, organising health camps in the sites and formation of peer groups. TRIAL REGISTRATION: The trial has been registered in the Clinical Trial Registry India, which is included in the WHO list of Registries, Reference number: CTRI/2022/02/040307. Registered 18 February 2022.
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Objectives: This study aims to explore patients' and clinicians' experiences in managing and living with refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with RA or polyarticular JIA from their perspectives through interviews and/or focus groups. Methods: A qualitative exploration with 25 patients and 32 multidisciplinary rheumatology healthcare professionals (HCPs) was conducted to obtain participants respective understanding and experiences of managing RD/PPES and its impact on the patient-professional relationship. A pragmatic epistemology approach with framework analysis was employed. Results: Four key themes were identified from both patients and professionals in the management of RD/PPES: risk/perpetuating factors/triggers; need for a patient-centred holistic approach to care, diagnosis and treatment; discordance and impact on the patient-practitioner relationship and current problems in managing RD/PPES. These themes covered 22 subthemes, with none being patient specific and seven being HCP specific. Suggestions for potential management strategies were highlighted throughout, such as involving other specialties or a multidisciplinary team, assessing/treating patient-reported outcome measures and psychosocial factors, patient (re)education, need for adjustments/aids or adaptations, checking the diagnosis and further investigations/imaging and optimizing medications. Conclusion: Management strategies need to be developed that enable appropriate treatment plans for those with RD/PPES that account for wider biopsychosocial factors beyond inflammation and reduce discordance in the patient-practitioner relationship.
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INTRODUCTION: There are around 250 million adolescents (10-19 years) in India. The prevalence of mental health-related morbidity among adolescents in India is approximately 7.3%. Vulnerable subpopulations among adolescents such as those living in slum communities are particularly at risk due to poor living conditions, financial difficulty and limited access to support services. Adolescents' Resilience and Treatment nEeds for Mental Health in Indian Slums (ARTEMIS) is a cluster randomised controlled trial of an intervention that intends to improve the mental health of adolescents living in slum communities in India. The aim of this paper is to describe the process evaluation protocol for ARTEMIS trial. The process evaluation will help to explain the intervention outcomes and understand how and why the intervention worked or did not work. It will identify contextual factors, intervention barriers and facilitators and the adaptations required for optimising implementation. METHODS: Case study method will be used and the data will include a mix of quantitative metrics and qualitative data. The UK Medical Research Council's guidance on evaluating complex interventions, the Reach, Efficacy, Adoption, Implementation and Maintenance Framework and the Affordability, Practicability, Effectiveness and cost-effectiveness, Acceptability, Safety/Side Effects and, Equity criteria will be used to develop a conceptual framework and a priori codes for qualitative data analysis. Quantitative data will be analysed using descriptive statistics. Implementation fidelity will also be measured. DISCUSSION: The process evaluation will provide an understanding of outcomes and causal mechanisms that influenced any change in trial outcomes. ETHICS AND DISSEMINATION: Ethics Committee of the George Institute for Global Health India (project number 17/2020) and the Research Governance and Integrity Team, Imperial College, London (ICREC reference number: 22IC7718) have provided ethics approval. The Health Ministry's Screening Committee has approved to the study (ID 2020-9770). TRIAL REGISTRATION NUMBER: CTRI/2022/02/040307.
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Áreas de Pobreza , Suicídio , Humanos , Adolescente , Índia , Suicídio/psicologia , Depressão/terapia , Depressão/epidemiologia , Criança , Feminino , Ensaios Clínicos Controlados Aleatórios como Assunto , Masculino , Adulto Jovem , Resiliência PsicológicaRESUMO
OBJECTIVE: To understand (1) what guidance exists to assess the methodological quality of qualitative research; (2) what methods exist to grade levels of evidence from qualitative research to inform recommendations within European Alliance of Associations for Rheumatology (EULAR). METHODS: A systematic literature review was performed in multiple databases including PubMed/Medline, EMBASE, Web of Science, COCHRANE and PsycINFO, from inception to 23 October 2020. Eligible studies included primary articles and guideline documents available in English, describing the: (1) development; (2) application of validated tools (eg, checklists); (3) guidance on assessing methodological quality of qualitative research and (4) guidance on grading levels of qualitative evidence. A narrative synthesis was conducted to identify key similarities between included studies. RESULTS: Of 9073 records retrieved, 51 went through to full-manuscript review, with 15 selected for inclusion. Six articles described methodological tools to assess the quality of qualitative research. The tools evaluated research design, recruitment, ethical rigour, data collection and analysis. Seven articles described one approach, focusing on four key components to determine how much confidence to place in findings from systematic reviews of qualitative research. Two articles focused on grading levels of clinical recommendations based on qualitative evidence; one described a qualitative evidence hierarchy, and another a research pyramid. CONCLUSION: There is a lack of consensus on the use of tools, checklists and approaches suitable for appraising the methodological quality of qualitative research and the grading of qualitative evidence to inform clinical practice. This work is expected to facilitate the inclusion of qualitative evidence in the process of developing recommendations at EULAR level.
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Pesquisa Qualitativa , Projetos de Pesquisa , Humanos , Projetos de Pesquisa/normas , Medicina Baseada em Evidências/normas , Medicina Baseada em Evidências/métodos , Guias de Prática Clínica como AssuntoRESUMO
Long-term conditions and accompanied co-morbidities now affect about a quarter of the UK population. Enabling patients and caregivers to communicate their experience of illness in their own words is vital to developing a shared understanding of the condition and its impact on patients' and caregivers' lives and in delivering person-centred care. Studies of patient language show how metaphors provide insight into the physical and emotional world of the patient, but such studies are often limited by their focus on a single illness. The authors of this study undertook a secondary qualitative data analysis of 25 interviews, comparing the metaphors used by patients and parents of patients with five longterm conditions. Analysis shows how similar metaphors can be used in empowering and disempowering ways as patients strive to accept illness in their daily lives and how metaphor use depends on the manifestation, diagnosis, and treatment of individual conditions. The study concludes with implications for how metaphorical expressions can be attended to by healthcare professionals as part of shared care planning.
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This study assessed perception and experience of trained primary health care workers in using a mobile app-based version of the WHO mental health gap action programme (mhGAP) Intervention Guide in the assessment and management of people with mental health conditions in primary care in Nepal. A qualitative study was conducted with primary healthcare workers who were trained in using the WHO mhGAP mobile application in Jhapa, a district in eastern Nepal. Semi-structured interviews were carried out with 15 healthcare workers (3 females and 12 males) nine months after the training. Interviews were audio recorded, transcribed and translated into English for the thematic qualitative data analysis. Health care workers (HCWs) found the mobile app helpful to verify and confirm their assessment and diagnosis. The other benefits reported by the participants were: bringing uniformity in diagnosis and management of mental health conditions across primary healthcare facilities; reminding the HCWs specific assessment questions; creating awareness on the importance of psychosocial intervention; improving the interaction between patients and service providers; and the importance of follow-up care. Despite these advantages, lack of clarity about report submission modality; lack of electricity or internet connectivity; and low technology literacy among older HCWs were some of the barriers in using the app. The major recommendation made by the HCWs for the guide included revision of the assessment process and system; inclusion of a chat function with supervisors; minimizing the amount of patients' data to be collected in the app; and addition of conversion and anxiety disorders to the app. This study concludes that the mobile decision support application could be acceptable and feasible in primary care settings if the suggested modifications are incorporated, in addition to addressing other systemic issues facing the primary care-based delivery of mental health services.